New England PANS PANDAS Association

#GivingTuesday - Be a #NEPANSchampion!

Please join NEPANS in kicking off the #GivingSeason so we can continue to make a difference in the PANS/PANDAS Community! We have a great year planned but we need your help to make that happen. Be a #NEPANSchampion by donating today and sharing the NEPANS #GivingTuesday Toolkit materials today.

NEPANS Current & Upcoming Projects:

Provide PANS/PANDAS Materials to more organizations, families, schools, therapists and more

Host Educational Workshops

Increase the number of Outreach Events

Speak on a panel at The Council For Exceptional Children's national conference with Patricia Rice Doran in April, 2017

Holiday Survival Guide

Holidays are fun. But they are stressful even without throwing an autoimmune disease into the mix. Take a deep breath. These are your holidays, no one else's. The holidays get packed with activities pretty quickly. The important thing is to be around family, spending time, trying to catch a breath and being thankful for the little things. Most importantly, find joy in the moment.

PANS PANDAS Family Stories

No one can tell the stories of what it is like to live with PANS & PANDAS like those that have experienced it. The list of symptoms and descriptions of various treatment protocols does not bring the condition to life. The family telling their individual story is what illuminates the day-to-day struggles and triumphs our children and families experience.

What is PANS/PANDAS?

P.A.N.D.A.S. (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) and P.A.N.S. (Pediatric Acute-onset Neuropsychiatric Syndrome) are terms used to describe a subset of children and adolescents who experience an encephalitic-like onset of neuropsychiatric symptoms following an infection such as Strep, Pneumonia, Lyme, Mycoplasma, Mononucleosis, and more.

In simple terms, antibodies created to fight the infection become misdirected and attack a small area of the brain known as the basal ganglia. This autoimmune reaction results in an acute onset of neuropsychiatric symptoms that can include: separation anxiety, OCD, severe eating restriction tics, age regression, sleep difficulties, personality changes, urinary frequency, irritability, rage, sensory sensitivities, and deterioration in learning abilities.

NEPANS School Resources

For kids with PANS/PANDAS starting the new school year off on the right foot is not an easy task. NEPANS has many resources for parents, teachers, school nurses and staff to utilize to assist them in understanding PANS/PANDAS, what accommodations and supports may be needed and examples of health care plans.NEPANS School Resources

Documentary on PANDAS "My Kid's Not Crazy"a film by Tim Sorel, follows the story of six patients with PANDAS and their struggles to find correct care and treatment.For more on this Documentary and more Videos

New One Page PANS PANDAS Fact SheetShare this NEPANS PANS PANDAS Fact sheet. It Easy to print off, email or post to social meedia. There is also a more in depth two page information sheet available for all to use. Both documents are available in color and black/white.PANS PANDAS Information and Fact Sheets

NEPANS Continues to Educate School Nurses - NEPANS helped to educate almost 300 School Nurses about PANS/PANDAS. Thank you to Dr. Nancy O'Hara, MD, MSN for being our featured guest lecturer and for dedicating so much time to furthering school nurse education!For this School Nurse Event & More

Facebook Video PostWant a quick image/video to share with information on PANS PANDAS to share on Facebook? It is easy as pasting in the link below!For PANS Information For Facebook

Excerpt from Statement by PANDAS PPN:"New IVIG study shows >60% mean reduction in symptoms for PANDAS patients.A new paper submitted to the Journal of the American Academy of Child & Adolescent Psychiatry describes the outcome of the NIMH double-blind placebo controlled study of IVIG for treatment of symptoms in children who met the criteria of PANDAS. While the study has many interesting findings, the most significant is that children who had prophylactic antibiotics followed by an open-label IVIG had a >60% mean reduction in CYBOCS score. These symptom improvements were sustained through follow up at 6 months."For Complete PANDAS PPN Statement

PANDAS: Baseline Immunoglobulin Levels Predict Achievement of Remission at One Year Following IVIG TherapyDavid S. Younger, Phyllis A. Mast, and Denis A. Bouboulis (Journal of Neurology and Neurosurgery, 2016)Read More at Journal of Neurology and Neurosurgery

Excerpt from Study"Results: In the cohort of 114 children (74 male, 40 female) with confirmed PANDAS, mean age was 10.57 years, and mean duration of symptoms of PANDAS 4.27 years. Baseline serum Ig levels were normal in 47.44 % and low in any category in 52.56 %. Serum IgG subclasses were low in 26.47 %, total IgG in 25.51 %, IgM in 16.28 %, and IgA in 10.48 %. Low levels of IgA (p < 0.006), IgG (p < 0.0001)) and IgG subclasses (p < 0.0003) were associated with 100% improvement at 12 months. Of 114 patients, 22 (19.3 %) patients achieved 100 % improvement, all with low Ig levels, 20 of whom had low total IgG levels alone or in association with IgG subclass, IgA, or IgM levels. The remaining two patients had low IgG subclass levels alone or in association with low IgA. Age, sex, duration of disease, and baseline IgM levels were not associated with IVIg efficacy. Mild adverse effects of treatment occurred in 16% of the children. Conclusions: Children with PANDAS who had baseline low IgA, IgG or IgG subclass levels were more likely than others to achieve 100 % improvement after IVIg therapy at 12 months follow-up."

Excerpt from Chapter"Foreword: The inclusion of a chapter on pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (or PANDAS) is essential to provide a history of the disease and provide current information about its association with Streptococcus pyogenes (group A streptococci), tics, obsessive compulsive disorder (OCD) and its relationship to Sydenham chorea (SC), which is the neurologic manifestation of acute rheumatic fever. PANDAS has been misunderstood and confusing to doctors since its discovery, but the original group of the first 50 cases as described by Dr Susan Swedo (Swedo, et al., 1998) has a similarity to Sydenham chorea that distinguishes this initial group from tic and OCD cases. As this chapter will examine, the acute onset is an important feature of these disorders, as are their piano-playing choreiform movements, enuresis, night-time fears, separation anxiety, learning regression, and handwriting disabilities."